Five Feet Apart is being marketed as a tragic love story about two teens with cystic fibrosis who fall for each other. Starring Haley Lu Richardson as Stella and Riverdale star Cole Sprouse as Will, the tearjerker falls neatly into the genre of movies about terminally ill teens in love, from Love Story to The Fault In Our Stars. But Elsie Tellier, a 22-year-old Harvard student and blogger who has cystic fibrosis, sees it differently. “It’s not so much a love story as it is romanticizing self-harm and suicide and toxic relationships,” she tells Refinery29. She has called for a boycott of the movie on her blog, 65 Pink Roses.
Five Feet Apart was inspired by a a real couple, and the title refers to a real issue for people with cystic fibrosis (aka CF): the risk of cross-infection means that they must stay six feet apart from each other at all times (the title of the movie refers to Stella’s decision to “steal one foot back”). Some people in the cystic fibrosis community (aka CFers) are glad to see their illness — a rare and often misunderstood one — portrayed in the media. But others are concerned about the romanticization of the way Will and Stella risk their health and lives, inaccuracies about cystic fibrosis, and aspects of the movie’s marketing, including a since-deleted Instagram influencer campaign.
People with CF, as well as movie reviewers, have pointed out some medical inaccuracies: First, there's the luxurious hospital complete with a meditation room and pool, but no mention of how the patients afford it. Then, there's the fact that Stella and Will spend a lot of time in the hospital without masks on, which is typically recommended for people with CF in order to prevent breathing in germs. Kayla Ariana, a 19-year-old with cystic fibrosis who's reviewed the book Five Feet Apart (which was written at the same time as the screenplay) on her Tumblr, tells Refinery29 that Five Feet Apart also doesn't show "how hard it is to breathe and how self-conscious one might be. There's a type of shame, I feel, when I cough in general; there's always an apology after, because it's not normal for one to cough as many times or that hard.”
Jenn Whinnem, 39 (“and damn proud of it because I've outlived my life expectancy”), wrote about her experience crushing on another CFer as a teen (before the six-feet-apart rule was in place) on Medium. She tells Refinery29, “The biggest, most glaring flaw about Five Feet Apart is that if someone is in the hospital for a transplant, there's no way in hell any of their care providers would allow them to be that close to someone else with CF. They would be MORE than six feet apart. This really is a life-and-death situation, which the movie reduces to a plot device to make teenagers horny.”
While Whinnem isn’t concerned that Five Feet Apart will lead people with CF to enter romantic relationships with other people with CF, “What I DO find harmful is the romanticized presentation of a fatal illness that is so isolating, embarrassing, and at times, downright terrifying,” she says. Tellier says that she’s already observed young fans of the book entering CF spaces online to say things like, “‘Oh, I’m so sorry for you guys, your life sucks, I read this book and I cried.’ And that’s not really what we want,” she says. Tellier says she thinks the young fans entering CF spaces are doing so because Five Feet Apart “was purposefully made to create feeling of pity among the readers,” she says. “This is very much what we would call ‘pity porn.’”
Concerns about the movie were exacerbated by a campaign in which Instagram influencers compared the six feet apart rule to being far away from friends and family. “My brothers moved away when I was younger, and I miss them so much. I can relate to the characters in @fivefeetapartfilm who can’t hug or touch, but still help each other overcome life’s obstacles,” wrote one influencer. (The influencers later deleted their posts and apologized, but screenshots live on.) The influencers tagged the Five Feet Apart Instagram account in their captions and used the #ad hashtag, however it's unclear exactly how the campaign came about and who exactly paid the influencers. We reached out to the production company, CBS Films, and the influencers for more information, but did not receive a response.
When “I found out about this ad campaign... it was really upsetting. I kind of cried. Who DOES that? Who compares ‘Oh I miss my best friend because she lives in another state’ to having a disease that will kill you?” says Whinnem. “Can you see how insensitive that is? This is like paying bald ‘influencers’ to post about how they relate to people suffering from cancer.” Tellier compares the campaign to some of Baldoni’s comments about the film, namely that he hopes people walk out of the theater with a new respect for life, and his comparison of Cole Sprouse’s experience growing up as a child star to the experience of people living with cystic fibrosis. “It’s not a malicious thing, but he’s definitely being very misguided,” Tellier says.
Gunnar Esiason, who has covered the movie on his blog, points out that apart from the Instagram influencer campaign, the movie's social media advertising is "unsettling," such as a tweet of the trailer captioned "we're not crying, you are." He adds that the production company is also showing an "unwillingness to recognize criticism from members in [the] community."
The Five Feet Apart team consulted with cystic fibrosis activist and YouTuber Claire Wineland, who passed away in September 2018, and the movie is dedicated to her. A retired CF nurse was also on set to advise on accuracy. However, Tellier points out that there were no people with CF in the writers’ room or acting in the film. “It goes back to the old disability rights movement mantra: ‘Nothing about us, without us,’” she says.
This is not to say that everyone with CF is against Five Feet Apart; the movie has defenders within the community. Wineland's foundation has promoted the film, and the Cystic Fibrosis Foundation writes that they are "hopeful that the movie will be a positive opportunity to increase awareness of CF." Writer Brad Dell, who has cystic fibrosis, wrote a column for Cystic Fibrosis News Today called “In Defense of Five Feet Apart — Sort Of."
"The movie will be cheesy as expected for a teen romance, sure, but it provides provocative commentary on the complexities of CF life," Dell tells Refinery29. “I was surprised at how many accurate details they stuck into the story." He believes that after seeing the movie, "people will be more encouraged to fundraise for a cure when they realize the gravity of our disease.” He adds that he found the influencer ad campaign “insensitive, ignorant, and ineffective, but it wasn't malicious. I'll still watch the movie.”
Tellier says that although she agrees that there should be more awareness of cystic fibrosis, the movie is going about it the wrong way. “The things that CFers want is better awareness from the FDA about putting forward drug trials, which right now are way too expensive for most people; encouraging people to sign themselves up [as organ donors on their driver’s license]; or just giving disabled people the space to write their own stories."
“A lot of people are like, 'it’s exposure, it’s representation,’” she says. “But my opinion in general is that we shouldn’t have to settle for bad representation. Because this is not good representation.”